Banging My Head on the Neurotypical Wall.

This past summer I served on a committee which was made up of special educators, parents of disabled children, and fellow service providers. One other committee member was disabled. I was the only Autistic member. Typically I stay away from committees because they are not very accessible to me; too many conversations, a maddening about of words, rules and procedures which are counter-intuitive to me. Committees require a measure diplomacy and subtlety which do not come easily to me. However, I joined this one because I felt that Autistic representation was critical to the committee’s mission.

Since all of the committee members were involved with neurodivergent individuals in some capacity, I hoped that they would have awareness or at least a willingness to learn about the critical importance of assuring accommodations which create an accessible space for their one Autistic member, and by extension all neurodivergent people. Unfortunately, I found just the opposite. I found an impenetrable wall of neurotypical privilege between myself and the other committee members as my attempts to assert my ideas often went unheard. My input was often ignored, framed as “biased” or more often or not, repeated back to me in a “corrected” form where the other committee members told me what I “meant to say”. I became uneasy about speaking up, and then all alone when I did speak up. The experience left me feeling crushed under the weight of the systems which serve neurodivergent people, but are managed and controlled of the most part by neurotypical and non-disabled people. And perhaps worst of all, people who can’t or won’t acknowledge how it is problematic. It seemed to me too easy for the other committee members to hide comfortably behind their neuro-normative groupthink.

At one point a committee member said, in the middle of a point I was trying to make, that, “Everyone is a little Autistic,” I was stunned. I immediately corrected the person; either you are Autistic or you are not Autistic, but it is absurd to state that it is something that all of us are. It was all the more maddening because none of the other committee members seemed to think the comment was disrespectful or inappropriate. No one said anything, which effectively erased my disability from their discussion. If everyone is a little Autistic then what is the point of listening to an actual Autistic voice? What bothers me the most is that all of the committee members have a stake in lives of neurodivergent people, yet they seemed oblivious to how their treatment of their one neurodivergent member reflected on the treatment of all neurodivergent people, including in some cases, their own children. They not only lack the actual experience of neurodiversity [despite the claims of being “a little bit autistic”], but many also lacked any understanding of disability theory and history whatsoever. Without understanding, our history, how are we to providing safe and inclusive space for neurodivergent people?

How can we ever start to discuss empowerment without first demonstrating a desire to give up power so that others can take part? In order to tear this wall of neurotypical privilege down you can’t simply give a neurodivergent person a seat at the table and believe your responsibility ends there. Forcing neurodivergent people to operate in neuro-normative spaces will always create a disadvantage for us. It’s unfair. It acts as a barrier and inhibits our ability to fully use our strengths. It is the responsibility of neurotypical and non-disabled people to understand the full range of accommodations and assure they exist in the first place. It should not be the responsibility neurodivergent people to constantly remind everyone. Neurotypical and non-disabled people have the responsibility to understand our history in detail [institutionalization, infantilization, segregation, sterilization, eugenics, etc.] and question how that history and its narratives contributes to their own understanding of our lives and how this narrative continues to disempower us. Neurotypical and non-disabled people have a responsibility to listen our voices without filtering out the meaning of the message in order to make themselves feel more comfortable.

This metaphorical, neurotypical wall erases our voices and the validity of our lived experience. Creating spaces where our experiences are listen to and valued will help bring the wall down. Until them, my head will remain really sore.

Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

These issues are very common. It sounds like the committee included you for the sake of “ticking a box” so they were effectively only “paying lip service ” to the inclusion quota for the meeting to take place and be functioning. I hope you are able to go to an higher level than this committee to make concerns known.